October 2011 Rads

Snoopy73

Welcome Dawmson, we are in this together:-)

5kidsmom - I had 4 cycles of TC. I used the Penguin Cold Caps to keep my hair, so did not loose them during chemo. My hair has always been long as well, cut it during chemo so its kind above my shoulder now, have it ona pony tail all the time now:-) 

I am having my port removed tomorrow morning, feeling abit scared because my insertion experience was not good:-( surgery itself went well, but i passed out in the recovery room, they had to keep me for 3 hours!! Am hoping the removal goes smoothly. I have an appt on friday at 3pm to get my Zoladex shot (i get it every 4 wks) then at 4.30pm i have an appt with the Rad pple to go through i think the simualtion?!:-) (they told me its kinda like a "dress rehearsal" before the actual radiation on monday). I will keep you posted.

Kay_G

Okay, had Herceptin this morning, and onc. changed the story on the Vitamin D.  Three weeks ago, the NP said next visit they'd give me the script for Vitamin D, but would not start Tamoxifin until after rads because of side effects.  Saw a diffferent NP this week (other one was out because her son is sick).  She checked with onc and said no Vitamin D while on rads, there isn't much known about how it would affect rads, so shouldn';t start it until rads are done.  Also, next time I go, I will see onc and she'll explain anti hormonals and start Tamoxifin.  Geez, I think she better tell her NP how she wants her patients treated.

Snoopy73

Kay1963 - thats confusing and interesting, I am taking Vitamin D tabs.. been taking them daily since before i started chemo, took them while on chemo and was not told to stop taking them while on Rads. Thanks for that, i will check with my NP/RO on friday. I am also taking other vitamins (Silica).

Kay_G

Oh, well that is probably not nearly as strong as what they were going to prescribe me.  I had very low vitamin D when they checked when I was dxed, only 11.  They are going to give me 50,000 units daily.  You're probably only taking 1,000 or something like that.  It is funny all the different recommendations though.

5kidsMom

Snoopy, I'm just so impressed with the no hair loss   I lost mine, but I think it's because I had Adriamycin and Cytoxan.  The Adriamycin is nasty stuff.  I grew my hair back during the 2nd 3 mos of chemo.  Only got Taxol that time. 

Hope the port removal goes well for you!  I'm so pleased that I never had to get a port or picc line

marthah

Kay, I read somewhere (can't remember just where) that there are several vitamins you aren't supposed to take during rads b/c they fight free radicals, and that's exactly what the rads are in your body, so it diminishes the effects. I haven't talked to my RO about vitamins, but I've just halted taking them till my digestive system gets back on track.

5kidsMom, you mentioned being mad and tossing your rads documents after your first appt. I've been meaning to ask you...what happened to make you so angry? 

Snoop, here's hoping everything goes swell with your port removal!

Jandot

Hi ladies... I'm with you too. Finished my chemo July 11th, lumpectomy and SNB August 11th and axillary dissection September 1.



Had a visit with a second RO today, and have my sim on Friday, not sure when I actually start. Not looking forward to theses 37, daily visits...But am glad that this is the last step of treatment (except tamoxifen). Am finding myself to be more nervous than I thought I would be. Hoping we will all be done before we know it.



Marthah- A friend of mine who has been through this said no one warned her about the antiperspirant thing and she burned BADLY with one of her first treatments. She was fine with the Tom's deodorant. Thanks for starting this thread for us so we could do this together and compare notes!



I'm looking for a good resource of supplements/vitamins to avoid while on rads...has anyone come across one?

5kidsMom

Marthah. . . . I got upset after my first appointment for a couple of reasons.  I thought it was a consultation, as in maybe I will need rads maybe I won't, here are the reasons.  Instead everyone there already assumed I'd be having rads, and it was more an intake appointment.  The doc fell right in line with that and in my opinion was kind of a jerk about some of my questions. 

Long story short, I ended up cancelling 2 planning appointments then finally scheduling another consultation where I aired all my questions and concerns with the RO.  After everything was on the table, I felt much better and had a better understanding, and felt at peace with the treatment plan. 

marthah

Jandot, welcome to the club! I would suggest you check with your RO or the clinic's nursing staff about the vitamins. I'm just avoiding them altogether until I'm done with my RO treatments. I'll start tamox after that, so I'll re-consult with my MO on the vitamins then.

5kidsMom, I understand completely. Both my surgeon and my MO were very clear with me from the beginning that they wanted to be as aggressive as possible with me, so I would definitely be having rads. It's been a part of my treatment plan from the beginning. Good for you for being your own advocate. I am fortunate in that I've worked at the academic medical center where I'm receiving my treatment, so I know the in's and out's and the right questions to ask. And I'm willing to go along with what they recommend because a) I trust their judgment, and b) I've done my research.

I'm starting my delayed vacation tomorrow. Yay! DH (and I do mean darling husband when I use that!) and I are taking a nice fall drive in the convertible and doing some site-seeing next week. Also staying in some great, romantic places...maybe we can kick-start our suffering love life!

dexxy

Hi ladies-I'm starting Rads next week.  Snoopy and I are pretty much twins as far as treatments.  Finished chemo on 9/8, did TC, kept some hair but not as much as I would have liked, I too did cold caps but a different kind that they were testing.

as far a vitamins and supplements.  you want to NOT take any antioxidants.  VitD in small doses are fine along with most others if you don't know ask.  VitC no no. so multi vitamins are usually out.  I do world with a naturalist Dr so I'm pretty educated if any one has questions.  Deodarants, will cause burns so make sure you don't put them on or you make sure you wipe them off throughly before treatment.  looking forward to this all being over with!

nancygv55

I don't have anything to add to the threads but want to thank all of you for the great info and support.  I see my RT tomorrow then start my rads on Monday.  The deodorant reminder is very helpful as it is such an automatic thing to do each morning it would be easy to forget.  I'd better write myself a BIG note to put in the bathroom.  Have a terrific weekend ladies!

Jilian61

I have my simulation appt with RO in mid October.  I am hoping I will be healed after my surgery by then.  I still have quite a few open wounds from my surgery 3 weeks ago.  Has anyone else had to deal with this??  I am planning on postponing the rads if I am not healed enough - hate to put my body through anymore especially with the side effects on the skin.  Thanks for any information .

Kay_G

Welcome Jillian 61.  I had surgery six weeks ago.  I don't have any open wounds.  My PS said to wait a full 6 weeks before beginning rads.  Am seeing her on Monday before simulation, so will see what she says, but I seem to be healed from sx.  I don't blame you, I would not start until I felt healed.  I think you'll be surprised what a difference another couple of weeks will make though.

Ceeztheday

Hi ladies. I'm sorta a two grouper as I started in September and will end in October. Today, I had #20 of 35. 35 seems like a lot to me, but whatcha gonna do. I want to tell you about an experience that I had. During my second week, I had breast pain (not skin, more like the tissue). It was difficult to sleep and I was tired and worried. The nurse said not to worry, that the body had to get adjusted to the treatments. I thought "that sounds like bull", but fortunately she was right. The third and fourth week have been much better. To make a long story short (oops, too late), my second week I was freaking out that if it got lots worse each week that I'd never make it...but it did get easier! I might suggest that you reference the Sept 2011 group, or even the Aug 2011 group. Great groups of ladies and a peek into the future. Can be a bit scary, but also so encouraging and informative. Since my docs tell me very little (no packets for me), I have depended on the discussion groups for a lot of my info, Hang in there everyone. The weekend is almost here.

5kidsMom

Jilian what kind of surgery was it?  3 weeks seems kind of soon to start rads, but then what to I know!  Seems like each case is different.  My MX incision took almost 3 mos to completely heal.  I was reluctant to start chemo 3 weeks after surgery, but that did go fine.  Definitely ask if they need to wait on the rads till you heal up some!

Jilian61

I had a lumpectomy, IORT and breast lift.  Rads won't start for a few more weeks and I"m defiitely going to ask to postpone the radiation if not totaly healed.  Been putting on Aquacel twice daily - definitely healing from inside - outside skin just won't close in about 4 areas.  Doctor says it is healing which is good - just hard to be patient. 

Ceeztheday

Julian - I had a lumpectomy on July 22 and they waited until Aug 31 to start my rads. I'm pretty sure they will be very sure you are healed before starting you. Best of luck to you!

MostlySew

Hi, I'm like ceeztheday and am a "dual monther". I've had 12 treatments (would have had #13 today but the machine was down) and will finish the end of October.



Julian, I thought I'd jump in to say my lumpectomy incision also didn't want to heal. They'd done quite a bit of tissue rearrangement and there wasn't enough blood flow to promote healing. After seeing the surgeon weekly and messing with wet to dry dressings and abridements, he finally took me back into surgery, cleaned out the non-healing part and stitched it back up. It healed almost immediately after that although I was disappointed that I had to have more surgery! Anyway, my breast surgeon wouldn't release me for radiation till I was healed enough. The incision area was healed although still red when I started radiation and it hasn't gotten any worse.......knock on wood. I ended up waiting 9 weeks between my first surgery and rad start. Only 4 weeks from the 2nd surgery. So...i think they'll watch you and make certain your skin is ready before you start.



Nancygv, check with your RO they may have a deodorant they recommend. Lots of them advise to use Tom's. That gives me something to use cause you're right, it's hard to remember not to follow an ingrained routine in the morning....like shower and deodorant. Now, if I could just remember to use the new soap (dove) instead of my old standby which is still in the shower for my husband!



Enjoy the weekend everyone.

5kidsMom

Simulation is Monday, start date is Tuesday!!!  Had to go in today to get "touched up" LOL  My marks were coming off on one side.  Kind of bummed, if they had a tech who stayed later today, they could have done the simulation today and started Monday.  Just eager to start so I can be finished!! 

pam53

I started in late Sept.  Had 4 treatments so far.  I was pretty tired by last night--not due to radiation, just adjusting to the schedule.  Two nights a week I work until 9:30-10 pm (work four 10-11 hour days).  My treatment time is at 7:45 am.  They try and give me later appointments on the days I work late.  So, I hope the facility does not get too busy before I am done with treatment.   The techs are all very nice and are helping to make an unpleasant event as comfortable as possible.

Good luck to all you starting in Oct.

marthah

Just stopping by to say "welcome" to all the newbies who have joined the October Rads group! Yay us!

To those of you who have already started, thanks for sharing your experiences with us. 

5kids, looking forward to hearing about your first treatment on Monday! 

nancygv55

mostlysew, thanks for the advice.  I need to pick up the Dove soap, too, so you are truly a lifesaver.  I think I'm in denial half the time which is interesting because I'm usually a total planner and very detail oriented.  This is why its good to be helping each other!

MostlySew

Nancygv

You're welcome. That's why it takes a community to get thru this! There's always someone thinking at the times I'm having brain lock or even, gasp, melt- down.



You'll do fine in radiation. I've found the techs to be great and caring people. The others in the waiting room are all in the same boat as I am so there's a certain closeness you develop with complete strangers. Not to mention you're all dressed in silly gowns! Some days go fast and everything is on time and it only takes about 25 minutes including getting there 5 minutes early ( I'm compulsive that way) changing, getting radiated, changing back and in the car. Easy Peasy. Other days are all messed up, like yesterday when the machine broke, they called repair, made me and 3 others wait an hour to see the doc, who was also running late, then had me check back after lunch..never did get radiated. Ah well. That's why I take my knitting. I may finish this sweater yet!



To everyone starting next week, you'll do fine! And just think everyone, we're all that much closer to being done! Horrah for us.

abatellik

I was scheduled to start Rads last week, but ended up changing my mind about the doctor I will be going with, so it looks like I'll be starting Oct. too!

Dawmson- I too had the cancer on the left side. This is why I am going to change R.O.s- mine wasn't going to do anything to try to miss the heart. He said it was a "safe" level of radiation. Well, I am 31 years old and hoping to live quite awhile without a bad heart! So I may end up at the University of Michigan, which is an hour and a half each way from us... I hate to do this because it is lots of car riding for the kids and difficult to finagle the babysitting. But it is my heart and that is pretty darn important! U of M told us that deep breathing can move the heart a half of an inch, which may be enough to miss it entirely while still radiating the internal mammory lymph nodes.

 Kay1963- My oncologist wanted me to start the Tamox as soon as possible, but my oncologist at the U of M said to wait until after rads. He said that Tamox can interfere with the effectiveness of chemo and since chemo and radiation work in much the same way, it is better to wait until afterward to make sure the radiation has the best effect possible.  I decided I didn't come this far through treatments and surgery to make something less effective now :-) You may want to ask your NP about this?

5kidsMom

abatellik--did your RO have a specific reason for radiating the internal mammary lymph nodes?  Apparently this is a really "hot" issue with RO in general.  Mine said he NEVER treats that area unless there is a clear reason.  Unfortunately, I have a clear reason, and they are doing all they can to miss my heart.  I'm 10 yrs older than you, but still planning on a few more decades, and would rather not have heart damage later on!

nancygv55

Mostlysew, thanks again, I love your attitude!  Between silly gowns, goofy schedules and hairy armpits, one must simply smile and nod, right?  I'm glad you mentioned knitting.  My church has a prayer shawl ministry and the day I was diagnosed they delivered a lovely knit shawl which has been such a soft comfort to me.  I'm not much of a knitter (a sweater just boggles my mind) but I think I'd like to start knitting these shawls for others who need some comfort.  Hope your week goes well!

KiwiMum

Hi ladies. I had my staging/simulation today. They did a CT scan first, then worked out positioning etc with the rads machine. I am getting chest wall, superclavicular nodes and axilla.



Tomorrow is my last chemo. My port comes out Wednesday and then rads starts Oct 18. There's never a dull moment with BC treatment.

Kay_G

KiwiMum, I have my simulation this afternoon.  Supposed to start rads tomorrow as long as I get go ahead from PS today.  I hope so.  Want to get this over and done with.

Snoopy73

Hello Ladies, happy monday:-) Hope you all had a great weekend... mine was busy, fun and good:-) took the kids to an indoor play area on saturday lots of fun.. walked 6 miles yday for the American Cancer Society's "Making Strides to cure BC"... at work today, working until 3pm then off to my first Radiation.

Had my port removed on thursday, all went well phhhewww...Had my simulation/dry run on friday.. quiet an experience, but the techs and nurses were very nice, trying to make you comfortable.

My lump was also on my left side, and I am also very worried about the possibility of having heart & lung issues in the long run, but my RO suggested that I do my radiation on laying on the "prone" position, this way it minimises the effects of the rads to the heart. Anyone doing this? any advise?

5kidsMom

Simulation in a few hours.  Why does all this make me so nervous?!  After 6 mos of chemo and a mx wouldn't you think rads would be a piece of cake?  Ugh.  Butterflies in my tummy!